Connect
← Return to Treatment options that have worked for Small Fiber Neuropathy
Discussion
Treatment options that have worked for Small Fiber Neuropathy
Neuropathy | Last Active: Apr 20 2:04pm | Replies (106)Comment receiving replies
It's nice to have a site such as this to get a better handle on this insidious little monster. I am just reaching the point where I'm ready to toss Lyrica aside. I know it's only been a little more than five weeks, but I can't discern even the slightest improvement in terms of pain mitigation. I have another neurologist appointment on Wednesday when I will ask my Dr. if I should drop it, give it more time, or even increase my dosage. I may sound pessimistic, but I don't think it's going to work or help me.
I'm starting to come to the conclusion, from all I've read here and from all I've gathered from various other sources, that there's really no cure for it (at least the kind of neuropathic condition I and others have), not much hope for reversing its course, and that it's entirely a hit or miss proposition in terms of finding a pain mitigation program that truly and noticeably reduces the cycles of pain that I'm growing accustomed to.
For the first time in my life I'm facing the reality that I'm becoming an invalid of a sort. I've been lucky most of my life when it comes to my health. This is the first time I've faced a life changing health issue. I now have to take into account my neuropathic condition when it come to making decisions about so many things, such as the kind of vacation I might take, or how I might enjoy my weekend away from work.
Anyway...it's nice to hear possible courses of action to take, and just to hear others stories and challenges with this particular health issue.
Replies to "It's nice to have a site such as this to get a better handle on this..."
Wow, you sound like me. Somehow I’ve maintained some sort of optimism about life in general, even though I live with constant pain, and the activities I love have dropped away one by one. Facebook Memories is great for reminding me of this. Here I am two years ago, hiking with a group, with a joyful smile! Here I am 20 pounds lighter, with no permanently drawn brows from constant worry and pain! My career ended prematurely. My finances are in disarray.
But depression and hopelessness don’t seem like a good option for me. Because then what would I do?
As far as pain control, please read my story about Tegretol (carbamazepine). Probably because of the type of length-dependent small fiber neuropathy I have, it works for the burning pain when nothing else did. It’s a different seizure medication. My story is kind of interesting.
I also have Percocet 7.5 mg, my dose is 1/2 pill up to three times per day. It helps. I don’t give a flying flip if long- term opioid use is a bad idea. It helps my overall pain and gives me a break.
Hard to hold out hope at times, I know. But, for what it is worth, there are more drugs in the clinical pipeline for neuropathy than ever before and a few of them look to me to have some genuine promise, especially for neuropathic pain but also, in a few cases, for actual disease modification.
You are absolutely CORRECT. Every patient’s results from every possible
‘cure” will be different. We are each on our own quest although reports of other’s
journey is helpful.
Connect
@memyselfi, Love the member name you chose, kind of reminds me of one of my old catch phrases - "Who Me?".🙃 While there is really no cure at the moment for neuropathy, I think we all hold out hope for that magic bullet that will make it all go back to the way it was before. I think the worse thing about neuropathy is we lose some ability to do the things we used to love doing and that is the pits. I've been working on acceptance and finding other things that I love and can do with my limited abilities. The Foundation for Peripheral Neuropathy site has some information that I scan on a regular basis hoping for something new that might help.
--- Living Well with Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
Hoping you can find something you love and able to do easily.